Category: Sister

Three Dreams and A Dragon

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When I was thirteen, I bought a small, blue, canvas-bound book whose title, scrawled in loopy silver script, read, “The Interpretation of Dreams.” I purchased it because every morning, I awoke with vivid memories of three, sometimes four, dreams. About half of them were nightmares, but they didn’t trouble me as much as what I called the Sagas. In those dreams, I lived entire lives, and when I woke up and realized that none of it was real, the resulting devastation was almost as intense as if I just lost actual friends, a husband, children. I hoped that I would find answers about what the Sagas meant and achieve peace by way of the knowledge.

I never found my answers; when I started taking anti-depressants at age fourteen, the Sagas disappeared, so I abandoned my research. However, the nightmares began to run rampant.

Lately, my nightmares have been especially painful. I have three that take turns playing in my nocturnal theater. First, I dream that fierce predators escape from the zoo, lurking the city’s streets, lying in wait for unsuspecting humans to cross their path. Unfortunately, I’m the only one who knows this, so it falls to me to protect my husband and sister even though I don’t have a single weapon.

Next up, I awake on a dark beach. I lay on the rough sand, utterly confused by my surroundings. Then a pair of hands reach down to help me up. I realize too late that they belong to my rapist. Raising a hand to caress my cheek, he says, “We’re the last people on earth. It’s just us. Now we can be together forever.” It’s then that I notice I’m wearing my wedding dress.

The worst dream starts before I even fall asleep. As I drift, memories of the words of my last Lower School Director and the Head of School echo in my head…

“Your students are bored.”

“Their parents lack confidence in you.”

“Maybe your personality is the issue. Go observe the Spanish teacher. Try to be like her.”

“You lack presence in the classroom.”

“Have you considered being a librarian? Then you won’t work with children every day, and you can be around those books you love so much.”

“You’re too academic.”

“Try not to look so frail. Stop hunching over your cane.”

“Are you really teaching if the kids aren’t learning? ”

“Fifth grade is an important year, and we need a teacher so fantastic that families don’t even think of transferring to another school for sixth grade. There are five families thinking of leaving – you’re not a strong enough teacher.”

“I’ve been disappointed in you from day one.”

Then, when sleep finally comes, I am teaching in a classroom with glass walls. I don’t have a lesson plan, and when I see the Lower School Director and the Head of School watching me, I panic, making one stupid mistake after another, knowing each is a nail in my coffin. The dream fades when memory wipes away the fear and reminds me that it’s over now. I survived being kicked to the curb, and – awful as it was to end my career on a low note – they can’t hurt me anymore.

I don’t need the book to pick up the themes these dreams share; in each one, I am caught off guard and helpless. That is the essence of ALS. No one is prepared for the diagnosis (most cases can’t be tied to a family history, and lifestyle seems completely irrelevant). To make matters worse, the diagnosis comes with a decree of helplessness since there isn’t a thing you can do to fight back. I’m guessing that I am reliving the trauma of the diagnosis, but I don’t think it has to continue.

I recently realized that I am not helpless, not by a long shot. How many pieces have I written detailing my commitment to my range of motion exercises, my eagerness to participate in drug trials 135164, my openness to new medications and protocols 136165 to manage my symptoms? I use the cough assist 137166 to keep my lungs strong, my feeding tube to maintain proper nutrition and hydration, and my tobii to prepare for when I lose my ability to speak. I am not sitting on the sidelines watching this monster consume me. I am fighting the dragon with a small dagger, slashing and slicing bit by bit until I bleed it dry. From now on, I will hold this gruesome, glorious image in my mind as I fall asleep. Maybe then I’ll dream of slaying the beast.

Writing Through It

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Ever since Donald Trump won the election, I am a stranger in a strange land. For our next leader, my country chose a man who personifies rape culture. My PTSD from when I was sexually assaulted is already severe because of him. Listening to him for the next four years and knowing he has power over me will make it worse. Plus, Trump wants to slash the health care legislation that allows me to receive wonderful treatment. Without my current insurance, my medical expenses are $200,000 per year. Things could get really bad. My sister has already offered to sell a kidney and her eggs if I lose my coverage.

I hang onto my sanity by writing through the madness. I now have the privilege of writing regularly for The Huffington Post and am currently composing an essay on Portland’s post-election protests and riots. Working on this piece has been an emotional process. It forces me to sort through my heartbreak. It challenges me to experience the election and protests in a way that aligns with one of my core values: choose hope over fear.

Fear’s long, dark fingers are already trailing down my back, though. They tug at me persistently. Giving in would be so easy, it would almost be a relief. But then I think back to that stream, the one that carries my emotions like leaves. There are many leaves in the stream. I picked up fear, but I can put it back in the water and watch it drift away. Maybe this is how I’ll choose hope: by opening my fists and letting everything else go.

“All your darkest sorrows, did you ever just give them back?” – Stevie Nicks, “Has Anyone Ever Written Anything for You?”

 

White-Knuckle Miracle

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I had to work for my miracle, sweat for it, white-knuckle it, but I didn’t mind; I never expected a miracle to be easy. No one promised me a rose garden.

I woke up from a nap today needing to use the bathroom, so I hit the button that pages my sister and planned how we would transfer me to the wheelchair. As she helped me get to the edge of my bed, I felt a rush of strength. Synapses sparked, lighting up my mind with the memory of walking. The path down the hallway ahead of me was clear and bright, and I saw what I could do.

“I want to walk to the bathroom,” I announced. I’ve had ALS two and a half years. At this point, abandoning my wheelchair to go for a stroll is almost as ludicrous as trying to fly.

“OK,” my sister replied without hesitation, pulling my walker in front of me. She got behind me on the bed, pushed me until I was standing, and placed her hands on my hips to steady me. “Whenever you’re ready.”

There will never be a better way to explain my sister than describing her actions in this moment.

I shuffled forward. My stiff ankles and knees, slowly remembering their job, loosened. In my mind’s eye, stringy, dry muscles were being marinated in blood pumped from my eager heart. With each step, the muscle tissue grew more swollen with life.

Over the course of ten minutes, I walked twenty feet. That’s ten minutes of a deathgrip on my walker, of clammy hands and a trembling jaw. Ten minutes of wonder and joy. I landed safely, marveling at what I accomplished.

“I’m not even out of breath,”I said, looking up at my sister. “It’s incredible.”

“I was worried about that,” she confessed, though she seemed so calm, I hadn’t even guessed. ALS affects everyone differently, but it always mounts a vicious assault on the lungs. That’s what kills us all in the end.

“I forgot to be scared,” I replied, enchanted by the sound of my own steady breathing. For those ten minutes, even my thoughts were freed from my disease. This was my very own little miracle, a butterfly dancing briefly on my open palm before fluttering away.

I once heard luck defined as the place where hard work meets an opportunity. After today, I would define a miracle as the place where hard work meets an extraordinary opportunity.  This opportunity comes through a tear in reality to bear you forward on a  divine wind. There are conditions, though. You must be ready and willing to see the tear in the fabric; that’s called hope. Understand that the wind has the strength of a hurricane (how else could it carry you?) and may batter you even as it saves you. Miracles thrive on perseverance and strong hearts.

I accept this. I am undaunted by exhaustion, bone-grinding effort, or crippling pain. I am not afraid because I have survived it all over the course of my disease and during the drug trial which, most likely, enabled me to walk today. From now on, if you come searching for me, check the crow’s nest. I’ll be perched there, on the lookout for miracles with my father’s binoculars and my mother’s optimism. I’ll be whispering, “Come. Fly over the horizon. Take your time if you must. I still believe in you.”

A Day With ALS

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I’m feeling inspired by writer and ALS advocate Sarah Coglianese’s response to the question, “What do you do all day?” The breakdown of her day made me realize that how I live now is incredibly foreign to the healthy people reading my blog. I have shared what Virginia Woolf called “moments of being”, micro-stories that I hope give you a sense of how it feels to walk in my shoes. However, I have yet to hand you the structure of my days . Here is a rough schedule for my average, exhausting, rewarding day.

Morning:

  • Showering with the help of a professional bath aide
  • Getting dressed
  • Putting on foot braces to stem foot drop
  • Taking regular medicine and trial medication
  • Eating breakfast if I have an appetite

Afternoon:

  • Taking medicine
  • Eating lunch
  • Breath Stacking
  • Physical therapy (PT)
  • Appointments or correspondence regarding medication
  • Planning fundraising events

Evening:

  • Taking trial medication
  • Breath Stacking
  • Preparing dinner
  • Eating dinner with my husband and sister, in-laws, and friends

Night:

  • Taking medicine
  • Hygiene tasks
  • Changing into pajamas
  • Writing in bed while not a creature is stirring, not even a dachshund.

Every day is a roller coaster at a shoddy carnival. Every day I have to choose again and again to feel the joy of the summits rather than the stomach-clenching pain of the drops. I feel a sense of accomplishment on many fronts, so I push myself to bask in that satisfaction. I have maintained fewer old friendships than I had hoped, but I am glad to spend time with new friends. I’m fighting isolation, and I am proud.

Sometimes, though, the valleys of this poorly maintained ride are dark and lonely. The rails rattle in a disturbing way, but I am helpless to do anything about it. I may vomit trying to eat because my appetite is so poor. Depending how stiff I am, PT can be frustrating. I often get worn out well before dinner time, which causes the quality of my speech to degrade. I also need help with almost every single task, so I am never, ever alone. This lack of privacy is emotionally exhausting beyond what I, a true extrovert, thought possible.

Yet I am starting to learn how to manage the roller coaster, figuring out when to grasp the shoulder harness until my nails crack and when to let go, throw my hands in the air, and shout in joy. ALS is a wild, deadly ride, but not one that will break me – whether or not l survive – because I know to reach for the sun whenever I’m hurtled towards it.

The Waves

Leaves in My River, Stars in My Sky

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I hate crying – it’s an uncontrollable language of pain, and I lack enough control as it is – but I was crying tonight. I’ve heard that no single emotion is inherently good or bad. We should acknowledge them all, pick each up like a leaf from a stream, think, “It’s just sadness,” then put it back down and let the water take it away. However, I like to pick up the Sadness Leaf, crush it, and bury it in the dirt. Out of sight, out of mind.

Scrolling through my Facebook feed after dinner, I found myself thinking about all the people who stopped speaking to me after my diagnosis, and tears, undeniable evidence of sadness, came. Mostly I stay positive. My doctor and I believe I will survive long enough for a treatment or cure to be developed. That possibility and the love of my friends and family keep me fighting. Still, the deafening silence from people I grew up with, celebrated holidays and birthdays with, listened to when they were troubled… it hurts enough to make my throat clench and my eyes sting. It starts a rush of unwelcome memories of staying up late on the phone, talking a friend through a divorce. Then I recall walking down the aisle preceded by bridesmaids who have faded like ghosts from my life, existing for me now only in photographs. Friends I traveled the world with might as well have stayed on the other side of the ocean; they are that distant from me. These people I loved drifted away like debris on a beach in the first high tide after a tempest.

In the quiet after the storm of my diagnosis, my old life washed away, and I learned the truth about those I love. People who are far away or have been out of touch resurface, and I realized that for all the people nearby who are too weak to support me, there are others, scattered like stars on a winter night, who have been glowing for me this whole time.

There is the college friend I met so many years ago and now only speak with occasionally, though we once talked every day. He was the one to hear the news and call, crying. No words, just sobbing because that said it all. I cried under cover of his tears, safe because I couldn’t hear my own.

Then there is the woman I knew only for one summer back in California when together we learned to cook like adults, follow a recipe, peel a mango. She flew to me in Oregon, made her super secret special cake, and promised to stay with me until the end and hold my husband’s hand at the funeral, whenever it may come.

Seven years ago, I met a girl in a karaoke lounge in DC, and we sang Britney Spears (ironically, if that’s what you need to believe to keep reading this post). We both moved, sometimes to the same cities. We campaigned together, hit all the vegan restaurants we could find, and lounged in parks with a pile of books. She stayed up late for a month after my diagnosis to answer my desperate 2 AM phone calls. She’s coming to visit this weekend.

Last month, my in-laws moved across the country to live five minutes away. My mother-in-law feeds me pills in yogurt so I don’t choke on water and helps me clean my teeth. Then there’s my father-in-law, who brings me desserts several times a week to keep my weight up and once spent a whole day assembling my hospital bed.

And last in this post but not in my life, the aunt and uncle who surprised me by sending a box full of starfish. They live at the beach where my family went on vacations. They must remember how I couldn’t end a week at the beach without bringing a starfish home. I brought a starfish with me when my husband and I moved 3,000 miles away to remind me of my childhood, but one night Malka ate it for reasons we cannot fathom. Receiving these new starfish reminded me that I and my precious past are not forgotten.

Allowing my mind to linger on these winter stars introduces some happiness and gratitude to my swirling thoughts. They are more leaves in my river, floating alongside and softly nudging the painful ones. They make it easier to unclench the fist I made around that first sour leaf, to let it go and trail my fingers in the water to feel whatever the current holds. It drifts on, benign and unremarkable.

After all, it’s just sadness.

Welcome to the Helicarrier

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Warning: Excessive Marvel references ahead.

This is not the story I wanted to write today. I planned on sharing something emotional and joyful. It was going to be a bigger piece, and I looked forward to a long stretch of appointment-free hours to get it done. However, ALS doesn’t care about plans. Like Loki in “The Avengers,” it lives for chaos.

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When I got out of bed, it was like stumbling onto the Helicarrier when Thor and the Hulk used it as an arena. The stress had my heart racing and made my speech even messier than usual. Evan was marching around the apartment on the phone trying to get an explanation for an unexpected and rather staggering medical bill. My theory is that marching keeps his energy up during marathon conversations about insurance and durable medical equipment – not naturally thrilling topics. Laura was on the phone at the table hunting down the right type of medical mattress for the hospital bed being donated to me (!!!!). I settled in beside her and she started spooning yogurt and pills into my mouth while on hold. Things must have been going well for her since she still in Bruce Banner mode. God help whoever tried to blow her off; she’s secretly the Hulk, and she’s on my side. Between her fierceness and Evan’s Captain America-esque determination, I felt plenty loved.

I also felt useless.

We finished with the pills, and Laura took the dishes to the sink. Then, as she dialed another number, she slid a piece of paper my way with notes about what she learned so far to catch me up. She went into her room to continue her work, and Evan parked himself next to me, hanging up and diving straight into a summary of where he was in his investigation. I made some notes about emails I could be writing to help, and noticed my voice getting stronger. His phone rang, he kissed my head, and he was off.

Laura’s door flew open at that moment. She raced to the table, skidding across the floor in her rush to get more scratch paper. I laughed hard, and she struggled to remain calm and polite to whoever was on the other end. Business now; laughter later.

Good caregivers can make people with ALS feel like Helicarrier leader and superhero guide Nick Fury. We can’t always speak or even hold a pen to write a phone number. If we are having a really bad day, yeah, we might be wearing an eye patch. Our minds are still sharp, though. There are days when we need rest, but there are also days when we like commanding the Helicarrier by pitching in, being informed, sharing our opinions.

We are grateful to the caregivers who know how to let us take back some control, the ones who remember that every now and then, even the weakest among us likes to stand at the helm, if only to remember how it felt to fly.

 

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Far From FDR

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Lately, I’ve been worrying a lot about my identity. So much is changing at what feels like breakneck speed. My body in particular is alien to me. I swing between thinking I am an ALS research guinea pig, a robot incorporating new mechanisms to extend the life of what is clearly a junker, or, most recently, a plain old invalid.

My sister is not OK with this.

Me: Am I an invalid?

Laura: Rachel, what are you talking about? They haven’t had invalids since FDR. Besides, I don’t we are supposed to use that word anymore.

Me: Oh… then what am I?

Laura: What you’ve always been. You’re a woman with pursuits.

It was pretty unexpected, a little Victorian, and a lot perfect. I remembered then that I’m more than braces, machines,  and physical therapy exercises. Maybe I’m not exactly what I’ve always been like Laura said, but I’m also not less than I was. And as far as pursuits go, I still chase dreams. Now, though, I’m racing after them in a 400 lb vehicle… I like my chances.

 

 

 

Disclaimer: No offense intended towards FDR, who, according to my grandma, totally rocked.

 

A Seat at the Table

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Seeing my mom reminds me I am changing, though slowly relative to most other people with ALS. When she visits, there is always a lot for her to learn: the new way to help me dress, which silverware I can handle, what medicine I take at night. The list goes on. My sister and husband swoop in, explaining so much I didn’t even realize they thought about:

“When she says she’s thirsty, you have to grab the pillow under her feet so she can sit straight up. That way she won’t choke,” Laura says, pulling the pillow away and handing me my water.

“Hold the glass for her between sips so her wrists don’t get tired,” Evan says, taking the water from my hands while I swallow.

They must be thinking constantly about my needs. I can look at either of them and when our eyes meet, they burst into action, knowing automatically what I am silently asking. It is amazing, but it can’t be easy, and watching them train my mom, I keep wishing I didn’t need so much, didn’t change so much.

I need to be here in Portland. The care I am getting here is perfect for me, and I am so lucky I made it into the clinic. It is still hard to be away from my parents, though. It’s easier when I think of this time apart as an investment: I will live longer and ultimately have more years with them because of the care I receive here. Watching my mom learn to take care of me as though I am a very strange kind of infant will never feel OK. Neither will seeing my sister and husband throw their time and energy down the drain of my healthcare. I have to believe, though, as the three of them work together, the distance and effort will be repaid one day by my presence at their dinner table, when we all have gray hair and have grown old, just like we hoped and planned long before we ever heard of ALS.

Deeper Than Bone

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Since my diagnosis, I have come up with elaborate methods for convincing myself I am OK with losing the chance to be a mother. I have a list of why kids would destroy my marriage and sense of self. I avoid places where children flock and families are happy (Salt & Straw Ice Cream Shop down the street is off limits on sunny weekends). I even tell myself this story: Evan and I get our wish; we have a baby! However, from the very start, we know something is wrong. The baby looks at us with a wicked gleam in his eyes. Before we know it, he is escaping his crib and biting our fingers and toes in the night. At school, he puts slugs in the other kids’ jello and sets fire to his library books just to deprive his classmates of the joy of reading. Next thing we know, he is a juvenile delinquent. He kidnaps us, loads us up in a stolen car, and keeps us captive in an abandoned hacienda in Argentina. It’s not so far-fetched. Think about it. Every maniac and psychopath you’ve ever heard of had a mom and dad. It’s totally possible Evan and I have narrowly avoided creating the next Voldemort. I like to think that.

Every now and then, though, I’m caught off guard and have no time to conjure images of evil Baby Doboga. Like when Laura and I were watching “New Girl” and a commercial for a fertility clinic came on. A picture of an ultrasound drifted across the screen and I made this sound. I didn’t know humans could make a sound like that. It was instant and animal. I can’t even tell you what I was thinking. I’m not even sure I was thinking yet. My reaction was pure instinct. Then pain and fury rushed in, and I ground my teeth and shut my eyes to hold it back. I don’t want to feel that again.

Laura understood right away. She grabbed the remote and switched to “Broad City,” a show featuring the funniest and least maternal women I’ve ever seen. “It’s fine now,” she said. “What are you thinking we should do when mom visits next week?”

That’s how we erase it, or at least bury it. We have to. A person can only feel so much at one time. We have to pick and choose which hurts to feel. However, I still think of that awful sound. Whatever savage pain made it lives on in the shadows of my heart and the twist of my intestines, deeper and stronger than my bones.

Loud Mouth

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I have a big mouth. I wasn’t always this way. Somewhere along the line, though, I learned to talk back, something I’m especially good at when sticking up for loved ones. Even though I’m in a wheelchair and my voice is fading, I just had to say something when a man catcalled my sister Laura from his car and made her incredibly uncomfortable. As loud as I could, I let him have it in what Laura later called a “fun mix of feminist ranting and light swearing.”

Suddenly, the man drove off and Laura grabbed my wrist. “Rachel, the volume is all the way up!” she cried. I must have looked at her blankly, because she tapped the microphone at my mouth and scrambled to turn down the sound on my brand new ChatterVox voice amplifier. I totally forgot I was wearing it, and with the sound up so high, I might as well have shouted through a megaphone!

We hid by a big hydrangea bush and laughed so hard while families heading to the park and people coming home from work looked around for the crazy lady broadcasting obscenities up and down the block. I was just catching my breath when Laura said, “Well, you’re definitely still a teacher… I know those kids just learned some new words.” I started laughing all over again. She was right; I never could pass up a chance to give a vocabulary lesson.